Hello all again, I am still waiting to hear from Stoke Mandeville Hospital regarding my complaints and expect this in the next couple of weeks. In the meantime after a meeting at the surgery and several letters Jenny's GP has apologised for the treatment Jenny recieved. The doctors have had meetings to discuss Jenny's case and to make sure they are all aware of the symptoms that may suggest ovarian cancer, and to keep this in their minds when a patient presents with those symptoms. Ovarian cancer awareness posters are up in both surgeries and patient leaflets are available. The GP said and I quote "this whole episode has definitely raised our Clinicians awareness of ovarian cancer and this can only be for the good", so first stage complete but the fight goes on. Love and best wishes to you all Alan xx
Alan & Jenny: Hello all again, I am still waiting... - My Ovacome
Alan & Jenny
Hi Alan. I hope you get the answers you are looking for and any changes that are made for the good of other women along the way are a credit to your strength, perseverance and love for Jenny. Xxx Trish
Hi Trish, if I get just one woman an early diagnosis then I have achieved something, but I am looking for much more, then Jenny's passing will not have been completely in vain God bless her xx
Thanks for the update Alan , your Jenny would have been so proud of you. For all.sorts of reasons doctors are required to reflect on what went wrong in cases like this and to make appropriate change to their practice. So what you are doing will help others.
With love and hugs xxx
Thank you for keeping on the case and getting the information out there, Jenny would be proud of you.
Dawn xx
Well done Alan, I am so shocked about the lack of awareness for this cancer. I remember sitting in the hospital waiting room with my dad, before we knew, reading a poster and realising from the symptoms that my mum had OC.
Makes me so angry!!!
Well done Alan. I was misdiagnosed too as I was seen by an F2 Dr in my local hospitals gynae ward. She scanned me and sent word to my gp that there was nothing gynaecological wrong. 3 months later seen privately and boom, ovarian cancer which turned out to be stage 3b. I wrote to the hospital concerned, received a deeply which I am not happy with but as yet haven't had the strength to write back. You have spurred me on and I intend to do that this week. With regard tyo my GP surgery, I now refuse to c the gp concerned. Don't get me wrong, not because she started treating me for IBS but because when I went back to tell her about my private appointment, her attitude was awful and I left her room in tears. No bedside manner whatsoever! Thinking of you. Ann
Hi Ann, Good luck with your cause, The more people that do complain and follow it through the more aware the clinicians become about this dreadful disease. Ignorance is plain to see within the medical profession about OC although there are a few who are excellent. Thank you for your thoughts xx
You are right to go ahead and complain, I wish I had the courage to do so on recurrence which was a delayed diagnosis by the gynae team. I suppose the bottom line is that I am still here after having more recurrences and the delay did not affect the out come. I had asked my family that time if I didnt make it, they were to make plenty of noise. My old gp who retired recently said to me, you know there was a huge delay in your treatment and that I could have gone the legal route. Well I stood my ground with the consultant later and spoke out what I needed to say. I know he let me down big time and so does he. I now see the oncologist only and get fantastic treatment and attention from him right down to the oncology nurses.
Thank you, according to the GPs in our surgery on four visits she had IBS, diverticulitis, depression and gall stones but actually she had two ovarian tumors. Aggresive Metastatic Gynaecological Adenocarcinoma XX
Dear Alan
This ignorance of symptoms seems to come up time and again, so well done- keep up the fight!
Regards
Anne
Just to add, Sandras only symptom was a lump in the groin....most GPs would pass it off as an hernia. Sandra was fortunate that her false hernia repair was booked in very quickly due to the surgeon diary having a free slot before his holidays.....imagine if the waiting list for these procedures were months. I would have lost her prob 4/5 years ago. This is the one symptom never mentioned in leaflets. Rgds Paul
High Paul, I know it is difficult to diagnose but if OC is not even in their mind what chance of an early diagnosis is there? Women and also partners need to be aware of the possibilities so its up to people like us to bring this awareness about
Well done Alan. Do hope your doing ok.
Love Jenny xxx
Hi Jenny of course I miss Jenny every waking minute and my life has changed beyond all recognition but each week that goes by I get a little stronger and her memory and the wonderful life we had together carries me through Love Alan xx
Keep staying strong Alan, and fight her corner I have told my Paul he has to live his life for me when I am no longer here, And i will be right behind him all though he wont see me we will always be close we met when i was 16 yrs old and Paul 18yrs so we have been together 50 odd years wow. I call that lucky me. xx Jenny xx
Jenny, you are an inspiration , I had 47 wonderful years with Jenny we met at 18 and fell in love and I still am in love so anything I can achieve will be in her name . Bless you xx
Just some feedback on this. My experience was much different, I do believe my GP saved my life. I went to him with severe pain across my chest. He examined me and sent me straight to A&E with a letter asking them to check my Pancreas, Bowel and Ovaries. I went to A&E and they did an X-Ray, said I had constipation and sent me home with laxatives. I was feeling a little bit better but still quite ill, when 4 days later I got a phone call from my GP. He was furious with A&E for not checking out everything he mentioned in his letter, he had called them and found the doctor who had examined me in A&E and gave him a piece of his mind. So much so, that the A&E doctor rang me around an hour after my doctors phone call and asked me to return the next day for an Ultrasound and a Transviginal scan. I went the next day and was admitted to hospital immediately after the scan results. I was operated on with 5 days!
My GP visited me twice while I was in hospital very late after his practice had closed around 8.30PM to check on me before and after the Op. He gets all the results and updates from my ONC and when I was in remission and Onc appointments were 6 months apart, he did a CA125 Test on me every two months which resulted in me finding out it was rising 3 months before my next ONC appointment which I then rescheduled . He has documentation in his waiting room about Ovarian Cancer and leaflets on support groups along with other diseases. I never went to him with any complaints before this just colds/flu etc. Just thought I'd mention it. He's not a young man either he's over 60 but by god he knows his stuff. I wish every GP was like him.
I was the same back in 2005 my gp found a mass and had me in hospital within hours. Had partial hysterectomy a month later and labs were borderline. Gynae had to stop in case of massive bleed. Then twelve months later recalled for the full debulking as he needed a gastro doc with him for the operation and it took that long to organise. Labs came back positive for oc and had to have chemo carbo and taxol. That was supposed to be my insurance policy. When I complained to my gp again of pain in 2009/2010 of course he was very suspicious and referred me to gynae team time and again I was having regular check ups and nothing pick up. Ca 125 was okayish but not enough to warrant a ct scan, my gynae said. In desperation gp referred me to rheumatalogist who ordered mri and I was so so upset when he told me my pain was because mri showed cancer back. My gp and other gps in this particular practice have been so good to me. So a lesson to be learned dont always blame the gp. I was being blanked by gynae team and so was my gp. Each consultant has a duty of care to every patient and they need to be reminded of that as well.
I really believe because we are told that Ovarian Cancer is rare enough that it is the last thing on everyones mind sometimes. I'm ashamed to say I never heard of it until I got it.
Maybe every GP or Hospital should take a CA125 test for every 50+ lady that presents with ? uti ? ibs ? whatever. I know CA125 isnt a be all and end all, but for many its a decent enough indicator - certainly it may lead to more being 'investigated' further i.e scans.
I say aged 50+ but in reality there is no reason why that couldnt be any lady of any age that sees a doc for any of the above. Apart from having to have blood taken - there is no harm done and possibly benefit to many.
For Christina we were lucky that after a few weeks being diagnosed with probable UTI her GP gave an internal and the ball started to roll from that point, so not much time was lost.
Good luck in your fight Alan.......... Laurence.
NICE protocols state GP's are supposed to do CA125 blood test for woman 50 and over stating also even if the IBS is not a new symptom/thought to be also a symtom and if the CA125 is over 53 'URGENT REFERRAL RO SECONDARY CARE' but its clearly not happening which is what needs highlighting. I know this because it happened to me and NICE state there is a problem with late referral and woman being diagnosed late which affects the chance of survival.
There you go then.....they are meant to, but they dont. You would think that every GP practise and every Hospital would have standardised blood tests, just in case.
Even though Christina didnt have too long to wait to be diagnosed after initially being diagnosed twice (wrongly) with UTI, had she been given the CA125 test the day we went to A & E with terrible stomach/groin pain - someone would have had the wherewithall to think outside the box.
It wouldnt have made much difference because there was only about 4-5 weeks from then till the internal from the GP which set the ball rolling.....but of course it could have been months, as it is for many.
You hit the nail on the head Laurence! Jenny had lots of bloods taken in the early stages all were normal but never had a CA 125 or internal examination until it was too late. Thank you
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